Today is the international day of people with disabilities. It’s one of those symbolic days that often don’t translate into the other 364 days of the year. The principle reasons for this are fairly simple: democracies view disability as belonging to the social contract but it’s also an inconvenience. Totalitarian states see it as a sign of cultural weakness: the disabled are defective. I’m using a sharp paring knife. Certainly no one who’s disabled would dispute these assertions.
Now having a “day” is really rather fascinating when you get down to it. One imagines it’s a bit like Andy Warhol’s declaration that in the future everyone will get fifteen minutes of fame. Today is your day so don’t waste it.
Alright. As we’re fighting for a livable future and the salvation of our planet I offer the following thoughts with sufficient hope for sharing. As Barbara Kingsolver writes in her remarkable novel Animal Dreams: “The very least you can do in your life is figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.”
Livable cities are inclusive cities. Accessible was good, but livable is better. Livable is beyond compliance: it means scalable, breathable, recyclable, open, clean of design, all of which mean human usefulness and dignity can be affirmed for all. I chose the word “usefulness” for a reason: when I enter a library and there’s no system for me to get accessible books and materials then the system is saying I lack usefulness. This tacit design flaw with its associated ableism is akin to the idea that taking care of the environment is simply inconvenient. There’s no difference.
We disable the environment and we disable people. Advanced design and sustainability can change this. Moreover we must stop disabling people as a principle of war and colonialism. We must see disablement as central to human rights and the attainment of peace.
And on this day let’s remember that even a Nordic country like Iceland is eliminating children with Down syndrome. Let’s remember that the advanced countries embrace of euthanasia has a eugenics twist. Let’s remember that disability rights are human rights. One should say this is simple but look what happens when the disabled have a “day.” Fifteen minutes isn’t enough.
Human Rights Watch puts it this way: “Worldwide one billion individuals have a disability. Many people with disabilities live in conflict settings or in developing countries, where they experience a range of barriers to education, health care and other basic services. In many countries, they are subjected to violence and discrimination. People with disabilities are also often deprived of their right to live independently, as many are locked up in institutions, shackled, or cycled through the criminal justice system. Many of these human rights abuses are a result of entrenched stigma and a lack of community-based services essential to ensuring their rights, including under the UN Convention of the Rights of Persons with Disabilities.”
I’ll add to Kingsolver’s idea of hope: we have to live inside it but carry it into the light of day.
ABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.
(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger